Got a need? Get a service.
That mentality has pervaded the field of early intervention 0-5, where we have seen the mindless piling on of services, families desperate for more services and more hours of those services, and professionals working to keep families dependent on their weekly sessions. But more is not better. In fact, it might be worse. In 2007, Dunst, Hamby, and Brookfield found that early intervention program service intensity had direct negative effects on self-efficacy beliefs and parent and family well-being. On the other hand, family-centered early intervention practices had direct and indirect positive effects. In a study of factors associated with parental stress and satisfaction during the diagnosis of children with autism spectrum disorders in Singapore, higher parental stress was associated with more professionals consulted and lower collaboration with professionals (Moh & Magiati, 2012). In a study conducted for his dissertation, my postdoctoral fellow, Pau García Grau, found that the number of professionals working with the family was inversely related to family quality of life.
Why is more not better and even possibly worse? First, the multidisciplinary approach to service delivery, defined as different professionals each doing their own thing and not talking to each other, can leave important child and family needs unmet. Each horse has its racing blinkers on and relentlessly pursues its discipline-specific race. Therefore, these professsionals conduct fairly narrow assessments—they’re interested only in their own discipline—and provide treatment based on that narrow and often decontextualized assessment. The problem is that child and family needs often fall between these narrow tracks. Which discipline is in charge of the child’s highly restrictive food acceptance? Which deals with the child’s tantrums during hair washing? Which one deals with the child’s anxiety? Which deals with the child’s lack of interest in toys? Which one deals with the mother’s depression when she is home alone with her child? Which one deals with the father’s yearning to get a college education? Which one deals with the young mother’s disempowerment, living with her own mother?
Second, dealing with many professionals can be time consuming. We should take this “opportunity cost” into consideration, when analyzing the impact of the number of professionals. At first, families are delighted to have so many people on the so-called team. They feel they’re doing what’s best for their children. But as the months go by, the toll of taking the child for services, being home for them, or handling communication with the school-based ones can become a drag. I once interviewed, for a research project, a young mother in a housing project in Pittsburg. Her child had significant disabilities. She was clearly intelligent but with limited education. She had taught herself a lot, not just about her child’s problems but about life in general. She was unemployed. When I asked her if she was leading the kind of life she wanted to, she said, “What choice do I have? I have to take him to therapy.” She described how, on 2-4 days a week, she had to take him to the bus stop and take two buses to the clinic where he received occupational therapy, physical therapy, and speech therapy. She also had to be home one day a week, at least for an hour, to receive home-based early intervention from an educator.
“Has anyone ever talked to you about alternatives, so he can get the help he needs and you can have a job?” She snorted a sardonic laugh.
“No one has even asked me what I want.”
The number of problems with this scenario is too enormous and wearying to list. And this is not an isolated, unique case. We hear stories like this all the time. A few weeks ago, the New York Times reported that scores of families in northeast Brazil who had a baby with microcephaly from the zika virus were getting on buses at 3 in the morning to go to Recife, hours away, for the child to be seen in short sessions by various therapists, then trekking all the way back. Everyone assumes this life is what you get when you have a child with significant disabilities. It’s unnecessary, costly, and damaging. Damaging in two ways. First, it deprives the family of opportunities to spend their time doing something more fun or productive. Second, it teaches the family incorrectly—that these injections of therapy, out of context make a difference. That this is how children learn. Any time we give parents wrong information, we are damaging their parenting and therefore the child’s development. We are turning parents from “teachers” (the natural role of parents) to chauffeurs. (That’s what we’re supposed to be when soccer, gymnastics, and swim team begin!)
The third problem with having too many cooks in the kitchen is that it’s a waste of resources. In my consulting work, I am often presented with an overview of the service delivery method and then asked for advice on how to make the resources stretch further. They might have waiting lists, they might have reduced home visits to monthly (checking in, not digging in, as Dathan Rush says), or they might have shortened their visits to half an hour. I look at service plans, which go by different names in different parts of the world, and I see a slew of professionals on each plan, all with considerable intensity—often weekly. (If you think that sending a different kind of professional into the home each week—say, four professionals a month, visiting monthly—is a good solution, think again!) A waste of resources is less important than misleading families but it also has an impact on families. If family wants a consultation from a physical therapist, for example, but the PTs are all booked up because they’re seeing everyone weekly, the family might have to wait a long time or go elsewhere.
A fourth problem is that professionals who work with the family independently often give conflicting information. They also assume that the parent will consider their own intervention suggestions as the top priority. When you have four professionals each thinking that, someone’s going to be disappointed.
|Nova Scotia, June 2017|
The best solution is a primary service provider. The PSP approach fosters teamwork, uses resources wisely, gives the family a unified support, and reinforces in families the fact that children learn throughout the day from the adults caring for them.